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Public Health Informatics This page intentionally left blank. Public Health Informatics Designing for Change— A Developing Country Perspective Sundeep Sahay Professor, Department of Informatics University of Oslo, Norway T. Sundararaman Professor, School of Health Systems Studies, Tata Institute of Social Sciences, Mumbai, India Jørn Braa Professor, Department of Informatics University of Oslo, Norway 1 1 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © Oxford University Press 2017 The moral rights of the authors have been asserted Impression: 1 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by licence or under terms agreed with the appropriate reprographics rights organization. Enquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above You must not circulate this work in any other form and you must impose this same condition on any acquirer Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America British Library Cataloguing in Publication Data Data available Library of Congress Control Number: 2016951476 ISBN 978– 0– 19– 875877– 8 Printed and bound by CPI Group (UK) Ltd, Croydon, CR0 4YY Oxford University Press makes no representation, express or implied, that the drug dosages in this book are correct. Readers must therefore always check the product information and clinical procedures with the most up-to- date published product information and data sheets provided by the manufacturers and the most recent codes of conduct and safety regulations. The authors and the publishers do not accept responsibility or legal liability for any errors in the text or for the misuse or misapplication of material in this work. Except where otherwise stated, drug dosages and recommendations are for the non- pregnant adult who is not breast- feeding Links to third party websites are provided by Oxford in good faith and for information only. Oxford disclaims any responsibility for the materials contained in any third party website referenced in this work. Foreword While human capacity to digest large numbers of statistics, and to translate those statistics into public health action, may have increased only piece- meal, the demand for data and statistics is expanding exponentially. The 2030 Agenda for Sustainable Development, with 17 goals and 169 targets, illus- trates this increasing demand. Well over 200 indicators have been proposed for global monitoring of the Sustainable Development Goals, and for virtually all indicators disaggregation by all relevant stratifiers are considered essential. In addition, there is much emphasis on local analysis and use of data for decision- making. On the supply side, innovations in technology and greater affordability of digital devices have created much excitement and action in the world of data. The highest echelons in government are speaking about a data revolution. Many hope that the data revolution will allow low and middle- income countries to leapfrog many development obstacles. Health is no exception. There is much demand for ‘real time’ data for decision- making. Such data not only include disease surveillance, but also performance of the health services, administrative data, and population health monitoring, including risk factors and determinants outside of the health sector. In healthcare, local disaggregated data collection, analysis, and communica- tion are additional priorities, directly linked to programme implementation and priority setting. The opportunities to introduce and use individual electronic health records, interoperable databases, geospatial databases, web- based platforms, and SMS- based platforms for reporting health facility data, data warehouses, and so on have been seized by many countries’ projects and researchers. The benefits for public health have, however, been modest compared to the levels of excitement and investment. This book by Sahay, Sundararaman, and Braa helps us understand why these benefits have fallen short of our expectations and provides clear guidance on the way forward, with a focus on low and middle- income countries. They chal- lenge the concept that public health informatics is a subdiscipline of health informatics, and turn this idea on its head. Using an array of empirical examples from many parts of the world, the authors build a convincing case for a vi FOREWORD broad definition of (expanded) public health informatics as the discipline that should encompass clinical informatics, electronic medical records, big data, and so on. The arguments are built up from the perspective of information demand and population needs. While innovation and technology are critical drivers of the data revolution, they are often not sufficient as a solution. Furthermore, the effective use of information technology requires a thorough understanding of the national health information systems in low and middle- income countries. All three authors have been working for decades in field of information technology for health, which is evident through their arguments, examples, and proposals that enrich this book. Most notably, they have been the global driving force behind a web-based platform for health facility data reporting (and local analysis and feedback), which has become a remarkable success in many low and middle- income countries. The secret behind this success is not only the improvements in information technology, or the authors’ remarkable persistence in developing the web-based platform with strong involvement from country stakeholders, but the simple fact that its development was fully grounded in public health needs. The public health data gaps in low and middle- income countries are well known. Inadequate data for public health action are due to major data gaps, quality problems, timeliness issues, including public health emergencies, and poor dissemination and use. Inadequate data affect individual healthcare, quality, and safety due to poor paper-based and fragmented electronic systems. There is a lack of knowledge about major public health issues because of gaps in knowledge about human behaviour, environmental issues, biomedical aspects, and so on. And many countries are not able to monitor progress to major international, regional, and national targets, such as the health-related Sustainable Development Goals. The field of public health informatics, in its expanded version as proposed in this book, has much to offer to address these deficiencies in the coming years. Effective linkages will have to be ensured with strength- ening health statistical capacity, both technical and institutional; new non- traditional sources of data and metadata, including big data, need to be leveraged; open data should be promoted— that is, open access to data respectful of national and international data policies, promoting transpar- ency and ensuring accountability; new and effective public and private col- laborations need to emerge. Above all, this requires a holistic approach that brings together multiple producers and users, considering multiple uses with a focus on population health, and all kinds of data— including clinical, FOREWORD vii population, and spatial—which are all nicely captured here by the term public health informatics. Ties Boerma, MD, PhD Director, Information, Evidence, and Research World Health Organization Geneva, Switzerland The Independent Expert Advisory Group (IEAG) on a data revolution for sustainable development: http:// www.undatarevolution.org/ wp- content/ uploads/ 2014/ 11/ A- World- That- Counts.pdf Preface This book is the chronicle of a struggle— a quiet, intense, and prolonged engagement by a remarkably diverse community of practitioners and academ- ics to address one of the most unexpectedly intractable problems of modern public health. There was an age of innocence in the opening days of the engagement in the 1980s, when the narrative was of a malfunctioning public health system in low and middle-income countries (LMICs), which would be set right through modernization using information and communications technologies (ICTs). The expectations of ICT cannot be faulted, and in sectors such as bank- ing and transport, ICTs have indeed helped to revolutionize performance. But as project after project in public health fails to live up to these expectations, and cycles of innovation to obsolescence become shorter and shorter, there is an air of bewilderment among health systems managers and administrators, and of denial combined with a stubborn techno-optimism amongst the technologists that the next wave of ICTs will fare better. However, the results show we are often barking up the wrong tree, trying to find solutions for wrong problems. Despite all the problems and travails, public health informatics is today more recognized as an integral and essential part of any health systems strengthen- ing or reform effort than it was two decades back. With this difference—

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